january - february 2014 - edmonton epilepsy association
TRANSCRIPT
Edmonton Epilepsy Parent Group Please go to eeparentgroupgmailcom or access ldquoEdmonton Epilepsy
Parent Grouprdquo on Facebook for more details on Januaryrsquos function and for the date time and location of the February function
Adult Support Group Schedule (Group meets from 400 - 600 pm in the EEA office)
Please call the Office to advise if you will be attending
Wednesday January 8 2014 Wednesday February 12 2014
January - February 2014
THE NEWSLETTER OF THE EDMONTON EPILEPSY ASSOCIATION
The Epilepsy Association of Northern Alberta - Our 54th Year of Service
(This Newsletter can be viewed in full colour on our website)
January
Deep Freeze Winter Festival Saturday January 11 100-300 pm Meet inside Nina Haggerty Centre for the Arts (9225ndash118 Ave) (pre-registration required) Collective Kitchen Session 1 Friday January 17 1230 - 300 pm EEA Office (program registration required) Fun BINGO for Prizes Friday January 31 100 ndash 300 pm EEA Office
Focus on Epilepsy
February
Computer Classes Wednesdays 100 - 245 pm February 5 12 19 26 EEA Office (program registration required)
Alberta Aviation Museum Sunday February 9 100-230 pm 11410 Kingsway Avenue Meet inside main entrance (pre-registration required) Collective Kitchen Session 2 Friday February14 1230 - 300 pm EEA Office (program registration required) Fun BINGO for Prizes
Friday February 28100 ndash 300 pm EEA Office
FREE MEMBER ACTIVITIES
Next ldquoBe Your Own Bossrdquo Program for Youth Starting Soon
See page 5 for details
Deep Freeze - A Byzantine Winter Festival
Saturday January 11 2013 100-300 pm (outdoor event - dress for the weather)
Click here for more information
Alberta Aviation Museum
Sunday February 9 100-230 pm 11410 Kingsway Avenue
Free Epilepsy Education Forum
ldquoEXPLORING PAIN IN EPILEPSYrdquo
Thursday March 6 2014 630-9 pm
See page 8 for details and registration information
When Thursday March 20th
Where Room 113115 St John Ambulance Building
12304-118th Ave
Timelines
545 FREE Light Supper 615 Annual General Meeting
715 Volunteer recognition event
800 Wrap-up
First Notice
2014 EEA ANNUAL GENERAL MEETING and
Volunteer Recognition Event
EEA Partners with TD Canada Trust in Employability Program
Through the initiative of EEA member Tim McCallen a Branch Manager with TD Canada Trust members who are potentially interested in part-time
positions as a bank customer service representative (Teller) or full-time positions such as a Financial Service Representative have an
opportunity to submit a resume directly through TDrsquos Prairie Region Human Resources Counsellor
For Further information contact EEA Executive Director Gary Sampley 488-9600 or garyedmontonepilepsyorg
Focus on Epilepsy is published 6 times annually by the Edmonton Epilepsy Association
Articles appearing in Focus on Epilepsy do not necessarily reflect the opinions of the Association
We welcome your contributions
Do you have a poem or maybe a short story (12 page) that you would like to share with others Or maybe you have read a book from our library and want to share a review with others If you would like to share your wisdom please submit your items to Wendy at our office or e-mail her at infoedmontonepilepsyorg
BOARD OF DIRECTORS
PresidentDon Risdon Past President Laura Jurasek Vice PresidentAnn Gillie TreasurerYvonne Leonardis SecretaryhellipDavid Cowan Executive DirectorGary Sampley
Directors-at-Large Tammy Anast Alex Dolan Guy Doucette Kim Mahe Anna Pagliuso Joe Scalzo Anna Tymoszejko
STAFF
Gary Sampley Executive Director amp Chief Operating Officer garyedmontonepilepsyorg
Sharon Otto Program Manager amp Education Coordinator sharonedmontonepilepsyorg Dr Sunny KimhellipCounsellor sunnyedmontonepilepsyorg Wendy SauvehellipAsst to the Executive Director infoedmontonepilepsyorg
Edmonton Epilepsy Association The Epilepsy Association of Northern Alberta
Focus on Epilepsy Page 2
11007-124th Street NW
Edmonton AB T5M 0J5
(780) 488-9600
(780) 447-5486 fax 1-866-EPILEPSY
infoedmontonepilepsyorg wwwedmontonepilepsyorg
Edmonton Epilepsy Association The Epilepsy Association of Northern Alberta
Now you can Donate to the EEA online If you would like to make either a lump sum Donation or a monthly
donation contribution to the Association by credit card please visit our website
wwwedmontonepilepsyorg and click on the Canada Helps Logo This donation program gives you the ability to instantly print off a donation receipt
Link to E-Actionrsquos On-line Epilepsy Resource and
Community
January - February 2014
More News From the EEA Office
Page 3
2014 EEA Scholarship Awards
The Edmonton Epilepsy Association will fund two $1000 Scholarships in 2014 for the purpose of assisting students to advance to or continue with College or University studies Application for these Scholarships is
open to Greater-Edmonton area students aged 17-29 years of age who are currently under a Canadian physicians care for epilepsy and are Canadian Citizens or who have permanent resident status
Visa students are not eligible for this award
Deadline for applications is March 1st 2014
To download an application visit our website wwwedmontonepilepsyorg or call our Office at 780-488-9600 if you wish to receive one by mail
Wersquore Looking for an Achiever
Do you know someone living with Epilepsy who has accomplished significant success in life inspiring others in the process
If you would like to nominate someone for the 2014 Award please do so in writing to the EEA office by March 1st 2014
If you have any questions about the criteria for the award please contact EEA Executive Director Gary Sampley at 780-488-9600 or garyedmontonepilepsyorg
Collective Kitchen Program Starting in January 2014
This is a combined support and training program to assist members living on a limited income who lack a knowledge of proper nutrition as well of budgeting and cooking skills Working collectively course
participants are guided into the world of nutrition and how it affects their seizures and overall health The course also covers issues such as low cost cooking food preparation budgeting skills and planning
ahead A hands-on course it has components of active teaching Each participant gets to take home what they have cooked usually four to six individual portions in freezable containers capable of fitting into a
fridge freezer compartment
The next Collective Kitchen Project runs on January 17 February 14 March 14 April 11 May 16 and June 13 2014
Interested members can phone the EEA Office at 780-488-9600 to register
Registration is limited to eight participants
Trophy donor Cam Reid presents Virginia Nason with the award while EEA President Don Risdon holds the man award trophy for the ldquoCameron Reid
EEA Volunteer-of-the-Year Awardrdquo
The award is presented annually to an individual who has provided significant and substantial ongoing volunteer service to the Association over numerous
years
Thank you Virginia for helping to make the EEA a better organization
Virginia Nason is EEArsquos 2013 Volunteer of the Year
Please note that we now have only a limited number of tickets available in the EEA Office These can be accessed by MEMBERS with limited financial resources who need help getting to
medical appointments EEA events food shopping etc and who do not have an AISH bus pass Call 780-488-9600 or drop by to pick them up
Bus Tickets Available for Members in Reduced Circumstances
Like everyone else our costs at the EEA go up every year One of our significant costs is postage
On December 11 2013 Canada Post who is struggling with ever-increasing annual deficits announced that it will be raising lettermail rates considerably in 2014 Depending on whether it is a standard 10 size envelope
or an oversize piece like the EEA newsletter the rate increases will be up to 58 higher than 2013 rates
We can send you our bi-monthly Newsletter and periodic notices about Member activities Education Forums Special Events etc by e-mail rather than by mail if you wish
We have a good Privacy Policy in place and we can guarantee you that nobody else will see your e-mail address Neither do we make our e-mail or mailing lists available to anyone else
If you have any questions give us a call (780-488-9600)
If you wish to sign up for e-mail communication from us please let us know by e-mail (infoedmontonepilepsyorg)
We will not use your e-mail address without your permission
Please do not respond if you have already signed up for e-mail information
If you donrsquot have e-mail or donrsquot wish to receive e-mail communication from us you will continue to receive hard copy mailings from us
Page 4 Focus on Epilepsy
News From the EEA Office
Need Prescriptions Filled We recommend the following Pharmacists who support the programs of the EEA For all your Pharmacy needs visit their
friendly helpful staff today
Southside
G amp E Pharmacy
7326-82nd Avenue
780-469-7667
Central
Royal Pharmacy
Ground Floor 11010-101 Street
780-426-0872
Next EEA Computer Training Program Begins in February
EEA members who wish to learn the basics of how to use a computer and have the opportunity to purchase a low-cost computer with a slim flat screen monitor keyboard and mouse package are requested to register now
The training program will run for four consecutive Wednesdays
from 100-245 pm commencing February 5th
There is a maximum of 4 participants for the course
EEA Assistant to the Executive Director Wendy Sauve will deliver the training
This program is a partnership of the EEA and the United Way InKind Centre
To register call Wendy at 780-488-9600 or e-mail infoedmontonepilepsyorg
Rising Postage Rates Will Affect EEA
Many Thanks to the Following Thoughtful Donors
Floral arrangement (shown at left) draw at our December15th Christmas Lunch amp Social Janet Flexhaug - ldquoA Little Touch of Classrdquo 780-920-3353
Floral amp Candle Arrangement Draw at the Social
Michel amp Christine Zielinski Fabra-Wall Acoustic Systems
$100 Presidentrsquos Choice gift certificate towards our January 2014 Collective Kitchen expenses EEA Support Services Committee Member Donna Fischer
amp the Kingsway Edmonton Real Canadian Superstore
Page 5 January - February 2014
Youth News From The EEA Office
If you are a youth or young adult aged 14-20 and live with one or more chronic conditions you probably face many challenges Alberta Health Services in partnership with the EEA is offering a free six-week workshop series on planning
for everyday living
February 6 13 20 27 and March 6 13 Thursdays 430-700 pm Edmonton Epilepsy Association 11007 - 124 Street
Supper Provided for All Participants
In a supportive environment with young people like you you will learn how to look after your condition and the various requirements associated with having a chronic condition how to carry on with school homework activities social life and relationships with friends and family how to handle the difficult emotions and stresses that come with living with a chronic condition
Call 780-488-9600 or email infoedmontonepilepsyorg to Register Downloadable detailed flyer available on EEA website
The Garry Hannigan Memorial Life Enhancement Scholarships for Youth to a maximum of $500 each are available for Youths of any age up to the age of 18 to assist them in participating in Sports Cultural or Recreational Activities that will enhance their development as individuals
Scholarship criteria eligibility details and the current Application Form can be downloaded from wwwedmontonepilepyorg or a hard-copy Application can be mailed to you on request to the EEA Office 780-488-9600
Does Your Child or Teen Have Upcoming Sports Arts or Recreational Activities Costs
Young Hockey Player is Recipient of aldquoGarry Hannigan Memorial Life Enhancement Scholarship for Youthrdquo
Nicholas Heyland aged 13 is the most recent recipient of a Garry Hannigan Memorial Life Enhancement Scholarship which enabled him to register with the Bantam-level Millwoods Griffins in the 2013-2014 Edmonton Minor hockey season
In the photo Nick is proudly displaying his gold medal from the 2013 EMHA Championships when he played for the Peewee-level Millwoods Raiders
Good luck this season Nick
Young Donor Puts Others First
In lieu of gifts for his 8th birthday Austin Saluk of Ardrossen requested donations for the Edmonton Epilepsy Association because his five-year-old sister Ashley has epilepsy
Austin is shown here presenting his birthday donations of $285 to an appreciative EEA Executive Director Gary Sampley Austinrsquos thoughtful donation will be used for the ldquoLife Enhancement Scholarships for Youthrdquo
Thank you Austin
New Blog by Family Affected by Epilepsy
Joelle an EEA member is the Edmonton mother of two children the youngest of which who has a rare progressive form of epilepsy called Dravet Syndrome Joelle and her family are ac-tive in the Epilepsy Community advocating seeking alternative treatments and increasing awareness while supporting
other parents with children with epilepsy httpdravetmommawordpresscom
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
EEA Partners with TD Canada Trust in Employability Program
Through the initiative of EEA member Tim McCallen a Branch Manager with TD Canada Trust members who are potentially interested in part-time
positions as a bank customer service representative (Teller) or full-time positions such as a Financial Service Representative have an
opportunity to submit a resume directly through TDrsquos Prairie Region Human Resources Counsellor
For Further information contact EEA Executive Director Gary Sampley 488-9600 or garyedmontonepilepsyorg
Focus on Epilepsy is published 6 times annually by the Edmonton Epilepsy Association
Articles appearing in Focus on Epilepsy do not necessarily reflect the opinions of the Association
We welcome your contributions
Do you have a poem or maybe a short story (12 page) that you would like to share with others Or maybe you have read a book from our library and want to share a review with others If you would like to share your wisdom please submit your items to Wendy at our office or e-mail her at infoedmontonepilepsyorg
BOARD OF DIRECTORS
PresidentDon Risdon Past President Laura Jurasek Vice PresidentAnn Gillie TreasurerYvonne Leonardis SecretaryhellipDavid Cowan Executive DirectorGary Sampley
Directors-at-Large Tammy Anast Alex Dolan Guy Doucette Kim Mahe Anna Pagliuso Joe Scalzo Anna Tymoszejko
STAFF
Gary Sampley Executive Director amp Chief Operating Officer garyedmontonepilepsyorg
Sharon Otto Program Manager amp Education Coordinator sharonedmontonepilepsyorg Dr Sunny KimhellipCounsellor sunnyedmontonepilepsyorg Wendy SauvehellipAsst to the Executive Director infoedmontonepilepsyorg
Edmonton Epilepsy Association The Epilepsy Association of Northern Alberta
Focus on Epilepsy Page 2
11007-124th Street NW
Edmonton AB T5M 0J5
(780) 488-9600
(780) 447-5486 fax 1-866-EPILEPSY
infoedmontonepilepsyorg wwwedmontonepilepsyorg
Edmonton Epilepsy Association The Epilepsy Association of Northern Alberta
Now you can Donate to the EEA online If you would like to make either a lump sum Donation or a monthly
donation contribution to the Association by credit card please visit our website
wwwedmontonepilepsyorg and click on the Canada Helps Logo This donation program gives you the ability to instantly print off a donation receipt
Link to E-Actionrsquos On-line Epilepsy Resource and
Community
January - February 2014
More News From the EEA Office
Page 3
2014 EEA Scholarship Awards
The Edmonton Epilepsy Association will fund two $1000 Scholarships in 2014 for the purpose of assisting students to advance to or continue with College or University studies Application for these Scholarships is
open to Greater-Edmonton area students aged 17-29 years of age who are currently under a Canadian physicians care for epilepsy and are Canadian Citizens or who have permanent resident status
Visa students are not eligible for this award
Deadline for applications is March 1st 2014
To download an application visit our website wwwedmontonepilepsyorg or call our Office at 780-488-9600 if you wish to receive one by mail
Wersquore Looking for an Achiever
Do you know someone living with Epilepsy who has accomplished significant success in life inspiring others in the process
If you would like to nominate someone for the 2014 Award please do so in writing to the EEA office by March 1st 2014
If you have any questions about the criteria for the award please contact EEA Executive Director Gary Sampley at 780-488-9600 or garyedmontonepilepsyorg
Collective Kitchen Program Starting in January 2014
This is a combined support and training program to assist members living on a limited income who lack a knowledge of proper nutrition as well of budgeting and cooking skills Working collectively course
participants are guided into the world of nutrition and how it affects their seizures and overall health The course also covers issues such as low cost cooking food preparation budgeting skills and planning
ahead A hands-on course it has components of active teaching Each participant gets to take home what they have cooked usually four to six individual portions in freezable containers capable of fitting into a
fridge freezer compartment
The next Collective Kitchen Project runs on January 17 February 14 March 14 April 11 May 16 and June 13 2014
Interested members can phone the EEA Office at 780-488-9600 to register
Registration is limited to eight participants
Trophy donor Cam Reid presents Virginia Nason with the award while EEA President Don Risdon holds the man award trophy for the ldquoCameron Reid
EEA Volunteer-of-the-Year Awardrdquo
The award is presented annually to an individual who has provided significant and substantial ongoing volunteer service to the Association over numerous
years
Thank you Virginia for helping to make the EEA a better organization
Virginia Nason is EEArsquos 2013 Volunteer of the Year
Please note that we now have only a limited number of tickets available in the EEA Office These can be accessed by MEMBERS with limited financial resources who need help getting to
medical appointments EEA events food shopping etc and who do not have an AISH bus pass Call 780-488-9600 or drop by to pick them up
Bus Tickets Available for Members in Reduced Circumstances
Like everyone else our costs at the EEA go up every year One of our significant costs is postage
On December 11 2013 Canada Post who is struggling with ever-increasing annual deficits announced that it will be raising lettermail rates considerably in 2014 Depending on whether it is a standard 10 size envelope
or an oversize piece like the EEA newsletter the rate increases will be up to 58 higher than 2013 rates
We can send you our bi-monthly Newsletter and periodic notices about Member activities Education Forums Special Events etc by e-mail rather than by mail if you wish
We have a good Privacy Policy in place and we can guarantee you that nobody else will see your e-mail address Neither do we make our e-mail or mailing lists available to anyone else
If you have any questions give us a call (780-488-9600)
If you wish to sign up for e-mail communication from us please let us know by e-mail (infoedmontonepilepsyorg)
We will not use your e-mail address without your permission
Please do not respond if you have already signed up for e-mail information
If you donrsquot have e-mail or donrsquot wish to receive e-mail communication from us you will continue to receive hard copy mailings from us
Page 4 Focus on Epilepsy
News From the EEA Office
Need Prescriptions Filled We recommend the following Pharmacists who support the programs of the EEA For all your Pharmacy needs visit their
friendly helpful staff today
Southside
G amp E Pharmacy
7326-82nd Avenue
780-469-7667
Central
Royal Pharmacy
Ground Floor 11010-101 Street
780-426-0872
Next EEA Computer Training Program Begins in February
EEA members who wish to learn the basics of how to use a computer and have the opportunity to purchase a low-cost computer with a slim flat screen monitor keyboard and mouse package are requested to register now
The training program will run for four consecutive Wednesdays
from 100-245 pm commencing February 5th
There is a maximum of 4 participants for the course
EEA Assistant to the Executive Director Wendy Sauve will deliver the training
This program is a partnership of the EEA and the United Way InKind Centre
To register call Wendy at 780-488-9600 or e-mail infoedmontonepilepsyorg
Rising Postage Rates Will Affect EEA
Many Thanks to the Following Thoughtful Donors
Floral arrangement (shown at left) draw at our December15th Christmas Lunch amp Social Janet Flexhaug - ldquoA Little Touch of Classrdquo 780-920-3353
Floral amp Candle Arrangement Draw at the Social
Michel amp Christine Zielinski Fabra-Wall Acoustic Systems
$100 Presidentrsquos Choice gift certificate towards our January 2014 Collective Kitchen expenses EEA Support Services Committee Member Donna Fischer
amp the Kingsway Edmonton Real Canadian Superstore
Page 5 January - February 2014
Youth News From The EEA Office
If you are a youth or young adult aged 14-20 and live with one or more chronic conditions you probably face many challenges Alberta Health Services in partnership with the EEA is offering a free six-week workshop series on planning
for everyday living
February 6 13 20 27 and March 6 13 Thursdays 430-700 pm Edmonton Epilepsy Association 11007 - 124 Street
Supper Provided for All Participants
In a supportive environment with young people like you you will learn how to look after your condition and the various requirements associated with having a chronic condition how to carry on with school homework activities social life and relationships with friends and family how to handle the difficult emotions and stresses that come with living with a chronic condition
Call 780-488-9600 or email infoedmontonepilepsyorg to Register Downloadable detailed flyer available on EEA website
The Garry Hannigan Memorial Life Enhancement Scholarships for Youth to a maximum of $500 each are available for Youths of any age up to the age of 18 to assist them in participating in Sports Cultural or Recreational Activities that will enhance their development as individuals
Scholarship criteria eligibility details and the current Application Form can be downloaded from wwwedmontonepilepyorg or a hard-copy Application can be mailed to you on request to the EEA Office 780-488-9600
Does Your Child or Teen Have Upcoming Sports Arts or Recreational Activities Costs
Young Hockey Player is Recipient of aldquoGarry Hannigan Memorial Life Enhancement Scholarship for Youthrdquo
Nicholas Heyland aged 13 is the most recent recipient of a Garry Hannigan Memorial Life Enhancement Scholarship which enabled him to register with the Bantam-level Millwoods Griffins in the 2013-2014 Edmonton Minor hockey season
In the photo Nick is proudly displaying his gold medal from the 2013 EMHA Championships when he played for the Peewee-level Millwoods Raiders
Good luck this season Nick
Young Donor Puts Others First
In lieu of gifts for his 8th birthday Austin Saluk of Ardrossen requested donations for the Edmonton Epilepsy Association because his five-year-old sister Ashley has epilepsy
Austin is shown here presenting his birthday donations of $285 to an appreciative EEA Executive Director Gary Sampley Austinrsquos thoughtful donation will be used for the ldquoLife Enhancement Scholarships for Youthrdquo
Thank you Austin
New Blog by Family Affected by Epilepsy
Joelle an EEA member is the Edmonton mother of two children the youngest of which who has a rare progressive form of epilepsy called Dravet Syndrome Joelle and her family are ac-tive in the Epilepsy Community advocating seeking alternative treatments and increasing awareness while supporting
other parents with children with epilepsy httpdravetmommawordpresscom
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
January - February 2014
More News From the EEA Office
Page 3
2014 EEA Scholarship Awards
The Edmonton Epilepsy Association will fund two $1000 Scholarships in 2014 for the purpose of assisting students to advance to or continue with College or University studies Application for these Scholarships is
open to Greater-Edmonton area students aged 17-29 years of age who are currently under a Canadian physicians care for epilepsy and are Canadian Citizens or who have permanent resident status
Visa students are not eligible for this award
Deadline for applications is March 1st 2014
To download an application visit our website wwwedmontonepilepsyorg or call our Office at 780-488-9600 if you wish to receive one by mail
Wersquore Looking for an Achiever
Do you know someone living with Epilepsy who has accomplished significant success in life inspiring others in the process
If you would like to nominate someone for the 2014 Award please do so in writing to the EEA office by March 1st 2014
If you have any questions about the criteria for the award please contact EEA Executive Director Gary Sampley at 780-488-9600 or garyedmontonepilepsyorg
Collective Kitchen Program Starting in January 2014
This is a combined support and training program to assist members living on a limited income who lack a knowledge of proper nutrition as well of budgeting and cooking skills Working collectively course
participants are guided into the world of nutrition and how it affects their seizures and overall health The course also covers issues such as low cost cooking food preparation budgeting skills and planning
ahead A hands-on course it has components of active teaching Each participant gets to take home what they have cooked usually four to six individual portions in freezable containers capable of fitting into a
fridge freezer compartment
The next Collective Kitchen Project runs on January 17 February 14 March 14 April 11 May 16 and June 13 2014
Interested members can phone the EEA Office at 780-488-9600 to register
Registration is limited to eight participants
Trophy donor Cam Reid presents Virginia Nason with the award while EEA President Don Risdon holds the man award trophy for the ldquoCameron Reid
EEA Volunteer-of-the-Year Awardrdquo
The award is presented annually to an individual who has provided significant and substantial ongoing volunteer service to the Association over numerous
years
Thank you Virginia for helping to make the EEA a better organization
Virginia Nason is EEArsquos 2013 Volunteer of the Year
Please note that we now have only a limited number of tickets available in the EEA Office These can be accessed by MEMBERS with limited financial resources who need help getting to
medical appointments EEA events food shopping etc and who do not have an AISH bus pass Call 780-488-9600 or drop by to pick them up
Bus Tickets Available for Members in Reduced Circumstances
Like everyone else our costs at the EEA go up every year One of our significant costs is postage
On December 11 2013 Canada Post who is struggling with ever-increasing annual deficits announced that it will be raising lettermail rates considerably in 2014 Depending on whether it is a standard 10 size envelope
or an oversize piece like the EEA newsletter the rate increases will be up to 58 higher than 2013 rates
We can send you our bi-monthly Newsletter and periodic notices about Member activities Education Forums Special Events etc by e-mail rather than by mail if you wish
We have a good Privacy Policy in place and we can guarantee you that nobody else will see your e-mail address Neither do we make our e-mail or mailing lists available to anyone else
If you have any questions give us a call (780-488-9600)
If you wish to sign up for e-mail communication from us please let us know by e-mail (infoedmontonepilepsyorg)
We will not use your e-mail address without your permission
Please do not respond if you have already signed up for e-mail information
If you donrsquot have e-mail or donrsquot wish to receive e-mail communication from us you will continue to receive hard copy mailings from us
Page 4 Focus on Epilepsy
News From the EEA Office
Need Prescriptions Filled We recommend the following Pharmacists who support the programs of the EEA For all your Pharmacy needs visit their
friendly helpful staff today
Southside
G amp E Pharmacy
7326-82nd Avenue
780-469-7667
Central
Royal Pharmacy
Ground Floor 11010-101 Street
780-426-0872
Next EEA Computer Training Program Begins in February
EEA members who wish to learn the basics of how to use a computer and have the opportunity to purchase a low-cost computer with a slim flat screen monitor keyboard and mouse package are requested to register now
The training program will run for four consecutive Wednesdays
from 100-245 pm commencing February 5th
There is a maximum of 4 participants for the course
EEA Assistant to the Executive Director Wendy Sauve will deliver the training
This program is a partnership of the EEA and the United Way InKind Centre
To register call Wendy at 780-488-9600 or e-mail infoedmontonepilepsyorg
Rising Postage Rates Will Affect EEA
Many Thanks to the Following Thoughtful Donors
Floral arrangement (shown at left) draw at our December15th Christmas Lunch amp Social Janet Flexhaug - ldquoA Little Touch of Classrdquo 780-920-3353
Floral amp Candle Arrangement Draw at the Social
Michel amp Christine Zielinski Fabra-Wall Acoustic Systems
$100 Presidentrsquos Choice gift certificate towards our January 2014 Collective Kitchen expenses EEA Support Services Committee Member Donna Fischer
amp the Kingsway Edmonton Real Canadian Superstore
Page 5 January - February 2014
Youth News From The EEA Office
If you are a youth or young adult aged 14-20 and live with one or more chronic conditions you probably face many challenges Alberta Health Services in partnership with the EEA is offering a free six-week workshop series on planning
for everyday living
February 6 13 20 27 and March 6 13 Thursdays 430-700 pm Edmonton Epilepsy Association 11007 - 124 Street
Supper Provided for All Participants
In a supportive environment with young people like you you will learn how to look after your condition and the various requirements associated with having a chronic condition how to carry on with school homework activities social life and relationships with friends and family how to handle the difficult emotions and stresses that come with living with a chronic condition
Call 780-488-9600 or email infoedmontonepilepsyorg to Register Downloadable detailed flyer available on EEA website
The Garry Hannigan Memorial Life Enhancement Scholarships for Youth to a maximum of $500 each are available for Youths of any age up to the age of 18 to assist them in participating in Sports Cultural or Recreational Activities that will enhance their development as individuals
Scholarship criteria eligibility details and the current Application Form can be downloaded from wwwedmontonepilepyorg or a hard-copy Application can be mailed to you on request to the EEA Office 780-488-9600
Does Your Child or Teen Have Upcoming Sports Arts or Recreational Activities Costs
Young Hockey Player is Recipient of aldquoGarry Hannigan Memorial Life Enhancement Scholarship for Youthrdquo
Nicholas Heyland aged 13 is the most recent recipient of a Garry Hannigan Memorial Life Enhancement Scholarship which enabled him to register with the Bantam-level Millwoods Griffins in the 2013-2014 Edmonton Minor hockey season
In the photo Nick is proudly displaying his gold medal from the 2013 EMHA Championships when he played for the Peewee-level Millwoods Raiders
Good luck this season Nick
Young Donor Puts Others First
In lieu of gifts for his 8th birthday Austin Saluk of Ardrossen requested donations for the Edmonton Epilepsy Association because his five-year-old sister Ashley has epilepsy
Austin is shown here presenting his birthday donations of $285 to an appreciative EEA Executive Director Gary Sampley Austinrsquos thoughtful donation will be used for the ldquoLife Enhancement Scholarships for Youthrdquo
Thank you Austin
New Blog by Family Affected by Epilepsy
Joelle an EEA member is the Edmonton mother of two children the youngest of which who has a rare progressive form of epilepsy called Dravet Syndrome Joelle and her family are ac-tive in the Epilepsy Community advocating seeking alternative treatments and increasing awareness while supporting
other parents with children with epilepsy httpdravetmommawordpresscom
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Like everyone else our costs at the EEA go up every year One of our significant costs is postage
On December 11 2013 Canada Post who is struggling with ever-increasing annual deficits announced that it will be raising lettermail rates considerably in 2014 Depending on whether it is a standard 10 size envelope
or an oversize piece like the EEA newsletter the rate increases will be up to 58 higher than 2013 rates
We can send you our bi-monthly Newsletter and periodic notices about Member activities Education Forums Special Events etc by e-mail rather than by mail if you wish
We have a good Privacy Policy in place and we can guarantee you that nobody else will see your e-mail address Neither do we make our e-mail or mailing lists available to anyone else
If you have any questions give us a call (780-488-9600)
If you wish to sign up for e-mail communication from us please let us know by e-mail (infoedmontonepilepsyorg)
We will not use your e-mail address without your permission
Please do not respond if you have already signed up for e-mail information
If you donrsquot have e-mail or donrsquot wish to receive e-mail communication from us you will continue to receive hard copy mailings from us
Page 4 Focus on Epilepsy
News From the EEA Office
Need Prescriptions Filled We recommend the following Pharmacists who support the programs of the EEA For all your Pharmacy needs visit their
friendly helpful staff today
Southside
G amp E Pharmacy
7326-82nd Avenue
780-469-7667
Central
Royal Pharmacy
Ground Floor 11010-101 Street
780-426-0872
Next EEA Computer Training Program Begins in February
EEA members who wish to learn the basics of how to use a computer and have the opportunity to purchase a low-cost computer with a slim flat screen monitor keyboard and mouse package are requested to register now
The training program will run for four consecutive Wednesdays
from 100-245 pm commencing February 5th
There is a maximum of 4 participants for the course
EEA Assistant to the Executive Director Wendy Sauve will deliver the training
This program is a partnership of the EEA and the United Way InKind Centre
To register call Wendy at 780-488-9600 or e-mail infoedmontonepilepsyorg
Rising Postage Rates Will Affect EEA
Many Thanks to the Following Thoughtful Donors
Floral arrangement (shown at left) draw at our December15th Christmas Lunch amp Social Janet Flexhaug - ldquoA Little Touch of Classrdquo 780-920-3353
Floral amp Candle Arrangement Draw at the Social
Michel amp Christine Zielinski Fabra-Wall Acoustic Systems
$100 Presidentrsquos Choice gift certificate towards our January 2014 Collective Kitchen expenses EEA Support Services Committee Member Donna Fischer
amp the Kingsway Edmonton Real Canadian Superstore
Page 5 January - February 2014
Youth News From The EEA Office
If you are a youth or young adult aged 14-20 and live with one or more chronic conditions you probably face many challenges Alberta Health Services in partnership with the EEA is offering a free six-week workshop series on planning
for everyday living
February 6 13 20 27 and March 6 13 Thursdays 430-700 pm Edmonton Epilepsy Association 11007 - 124 Street
Supper Provided for All Participants
In a supportive environment with young people like you you will learn how to look after your condition and the various requirements associated with having a chronic condition how to carry on with school homework activities social life and relationships with friends and family how to handle the difficult emotions and stresses that come with living with a chronic condition
Call 780-488-9600 or email infoedmontonepilepsyorg to Register Downloadable detailed flyer available on EEA website
The Garry Hannigan Memorial Life Enhancement Scholarships for Youth to a maximum of $500 each are available for Youths of any age up to the age of 18 to assist them in participating in Sports Cultural or Recreational Activities that will enhance their development as individuals
Scholarship criteria eligibility details and the current Application Form can be downloaded from wwwedmontonepilepyorg or a hard-copy Application can be mailed to you on request to the EEA Office 780-488-9600
Does Your Child or Teen Have Upcoming Sports Arts or Recreational Activities Costs
Young Hockey Player is Recipient of aldquoGarry Hannigan Memorial Life Enhancement Scholarship for Youthrdquo
Nicholas Heyland aged 13 is the most recent recipient of a Garry Hannigan Memorial Life Enhancement Scholarship which enabled him to register with the Bantam-level Millwoods Griffins in the 2013-2014 Edmonton Minor hockey season
In the photo Nick is proudly displaying his gold medal from the 2013 EMHA Championships when he played for the Peewee-level Millwoods Raiders
Good luck this season Nick
Young Donor Puts Others First
In lieu of gifts for his 8th birthday Austin Saluk of Ardrossen requested donations for the Edmonton Epilepsy Association because his five-year-old sister Ashley has epilepsy
Austin is shown here presenting his birthday donations of $285 to an appreciative EEA Executive Director Gary Sampley Austinrsquos thoughtful donation will be used for the ldquoLife Enhancement Scholarships for Youthrdquo
Thank you Austin
New Blog by Family Affected by Epilepsy
Joelle an EEA member is the Edmonton mother of two children the youngest of which who has a rare progressive form of epilepsy called Dravet Syndrome Joelle and her family are ac-tive in the Epilepsy Community advocating seeking alternative treatments and increasing awareness while supporting
other parents with children with epilepsy httpdravetmommawordpresscom
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Page 5 January - February 2014
Youth News From The EEA Office
If you are a youth or young adult aged 14-20 and live with one or more chronic conditions you probably face many challenges Alberta Health Services in partnership with the EEA is offering a free six-week workshop series on planning
for everyday living
February 6 13 20 27 and March 6 13 Thursdays 430-700 pm Edmonton Epilepsy Association 11007 - 124 Street
Supper Provided for All Participants
In a supportive environment with young people like you you will learn how to look after your condition and the various requirements associated with having a chronic condition how to carry on with school homework activities social life and relationships with friends and family how to handle the difficult emotions and stresses that come with living with a chronic condition
Call 780-488-9600 or email infoedmontonepilepsyorg to Register Downloadable detailed flyer available on EEA website
The Garry Hannigan Memorial Life Enhancement Scholarships for Youth to a maximum of $500 each are available for Youths of any age up to the age of 18 to assist them in participating in Sports Cultural or Recreational Activities that will enhance their development as individuals
Scholarship criteria eligibility details and the current Application Form can be downloaded from wwwedmontonepilepyorg or a hard-copy Application can be mailed to you on request to the EEA Office 780-488-9600
Does Your Child or Teen Have Upcoming Sports Arts or Recreational Activities Costs
Young Hockey Player is Recipient of aldquoGarry Hannigan Memorial Life Enhancement Scholarship for Youthrdquo
Nicholas Heyland aged 13 is the most recent recipient of a Garry Hannigan Memorial Life Enhancement Scholarship which enabled him to register with the Bantam-level Millwoods Griffins in the 2013-2014 Edmonton Minor hockey season
In the photo Nick is proudly displaying his gold medal from the 2013 EMHA Championships when he played for the Peewee-level Millwoods Raiders
Good luck this season Nick
Young Donor Puts Others First
In lieu of gifts for his 8th birthday Austin Saluk of Ardrossen requested donations for the Edmonton Epilepsy Association because his five-year-old sister Ashley has epilepsy
Austin is shown here presenting his birthday donations of $285 to an appreciative EEA Executive Director Gary Sampley Austinrsquos thoughtful donation will be used for the ldquoLife Enhancement Scholarships for Youthrdquo
Thank you Austin
New Blog by Family Affected by Epilepsy
Joelle an EEA member is the Edmonton mother of two children the youngest of which who has a rare progressive form of epilepsy called Dravet Syndrome Joelle and her family are ac-tive in the Epilepsy Community advocating seeking alternative treatments and increasing awareness while supporting
other parents with children with epilepsy httpdravetmommawordpresscom
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Focus on Epilepsy Page 6
Christmas Lunch amp Social
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Page 7 January - February 2014
Irish Sports amp Social Society
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Focus on Epilepsy Page 8
March 2014 Educational Forum
In partnership with
The Adult Convulsive Disorder Clinic at the Glenrose Rehabilitation Hospital
and
Presents
A Free Epilepsy Educational Forum
Previously Unexplored in our Series of Forums
ldquoExploring Pain in Epilepsyrdquo
Thursday March 6 2014
630-9 pm
Glenrose Hospital Auditorium 10230-111 Ave
A FREE Light Supper will be provided
For more information or to reserve your seat please call
780-488-9600 or toll free 1-866-374-5377
The Epilepsy Association of Northern Alberta
This forum will be of interest not only to individuals who live with epilepsy and their family members but also to health care professionals medical and nursing students and educators
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
January - February 2014
Page 9
Epilepsy News From Around the World
The US Food and Drug Administration has approved a device to help reduce the frequency of seizures in epilepsy patients who have not responded well to medications in the past
The NeuroPace RNS Stimulator consists of a small neurostimu-lator implanted in the skull under the scalp The neurostimulator is connected to one or two wires (called electrodes) that are placed where the seizures are suspected to originate within the brain or on the surface of the brain
ldquoThe neurostimulator detects abnormal electrical activity in the brain and responds by delivering electrical stimulation intended to normalize brain activity before the patient experiences sei-zure symptomsrdquo said Christy Foreman director of the Office of Device Evaluation in the FDArsquos Center for Devices and Radio-logical Health
Epilepsy produces seizures that can affect a variety of mental and physical functions Seizures happen when clusters of nerve cells in the brain signal abnormally which may briefly alter a personrsquos consciousness movements or actions According to the Epilepsy Foundation epilepsy affects nearly 3 million people in the United States and is the third most common neurological disorder after Alzheimerrsquos disease and stroke Approximately 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment
This recent FDA approval is supported by a three month ran-domized control trial that included 191 patients with drug resis-tant epilepsy
The clinical trial study showed that within three months after the implanted device was activated patients experienced an al-
most 38 percent reduction in the average number of seizures they experienced each month in comparison to an almost 17 percent reduction in the average number of seizures each month in patients who had the implanted device deactivated At the end of three month trial period the median reduction in seizures was 34 percent with active use and about 19 percent with the device turned off Also 29 percent of patients with an active device experienced at least a 50 percent reduction in their over-all number of seizures compared to 27 percent for those with the device turned off
During a two-year follow-up phase (unblinded) data demon-strated a persistent reduction in seizure frequency
Patients with RNS Stimulators cannot undergo magnetic reso-nance imaging (MRI) procedures nor can they undergo dia-thermy procedures electroconvulsive therapy (ECT) or tran-scranial magnetic stimulation (TMS) The energy created from these procedures can be sent through the neurostimulator and cause permanent brain damage even if the device is turned off
The most frequently reported adverse events during the clinical trial were implant site infection and premature battery deple-tion
National Monitor November 17 2013
httpnatmonitorcom20131117fda-okays-medical-device-to-treat-epilepsy
FDA Okays Medical Device to Treat Epilepsy
NeuroPacersquos stimulator
[Image source Fort Worth Star (left) NeuroPace (right)]
UK clinical trials are reportedly underway to test the safety of a potential new anti-epileptic therapy GWP42006 ndash a drug de-rived from specific chemotypes of the cannabis plant
This follows a five-year pre-clinical research programme under-taken at the University of Reading in collaboration with drug company GW Pharmaceuticals which identified GWP42006 as ldquoone of the most promisingrdquo cannabinoids that might be used to treat epilepsy
Interest in cannabis-derived treatment for the condition has grown significantly over the last few months particularly among paediatric epilepsy specialists in the US In many instances these physicians have hailed certain cannabinoids ndash notably cannabidiol ndash as successful in treating otherwise refractory childhood epilep-sies
This has resulted in the Food and Drug Administration granting several expanded access Investigational New Drug applications to clinicians allowing them to trial cannabinoid therapies in a small number of children with epilepsy
In the UK meanwhile GW Pharmaceuticals has described the progression of GWP42006 to Phase 1 clinical trial as ldquoa signifi-cant milestonerdquo
The drug which is non-psychoactive is said not only to sup-press seizures but to do so without causing documented side effects
Dr Ben Whalley senior lecturer in pharmacology at the Reading School of Pharmacy commented that it not only ldquoexerts signifi-cant anticonvulsant effects in a wide range of preclinical models of seizure and epilepsyrdquo but is also ldquobetter toleratedrdquo than many currently approved anti-epileptic therapies
ldquoIt is also noteworthy that GWP42006 appears to employ a different mechanism of action to currently available anti-epileptic treatmentsrdquo he added
ldquoTogether these findings fully support the exciting clinical devel-opment that is now underway and represent an important step towards a more effective and better tolerated treatment for epilepsyrdquo
Dr Stephen Wright director of research and development at GW Pharmaceuticals meanwhile said he believed GWP42006 has the potential to ldquobecome an important advancerdquo in the treatment of epilepsy ndash meeting a ldquosubstantial unmet needrdquo
Drug therapy is thought to be ineffective in as many as 30 per cent of all epilepsy patients either on account of not controlling seizures or leading to adverse side effects
Posted by Steve Long Sep 18 2013
httpwwwepilepsyresearchorgukuk-clinical-trials-underway-for-anti-epileptic-cannabinoid-2
UK Clinical Trials Underway for Anti-Epileptic Cannabinoid
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Page 10 Focus on Epilepsy
Epilepsy News From Around the World
Severe cutaneous adverse reactions (SCAR) such as Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are not merely medical conditions but also have a high social cost because of the high rate of lawsuits against pharmaceutical companies and prescribing physicians a medical research head said SCARs account for more than 50 percent of the government-funded Drug Relief Foundationrsquos annual compensation funds said Chung Wen-hung director of Drug Hypersensitivity Clinical and Research Center at Chang Gung Memorial Hospital Given that a large number of patients are frequently exposed to multiple drugs and are at a higher risk of developing drug hyper-sensitivity Chung and his research team have since 2002 been working on the identification of risk factors and genetic suscepti-bility of individuals who are at risk for SCAR The team has since found that carbamazepine (CBZ) a drug primarily used to control certain types of epileptic seizures and allopurinol a drug used to treat high uric acid levels are more likely to induce SJSTEN in people with certain genetic markers ldquoWe firstly reported a strong genetic marker of HLA-B1502 [a particular human leukocyte antigen (HLA) allele] for CBZ-induced SJSTEN in 2004rdquo Chung said in his presentation at the recent International Congress on Cutaneous Adverse Drug Re-actions Chung said that both the USrsquo and Taiwanrsquos Food and Drug Ad-ministrations followed by other countries relabeled the drug warning information recommending those of Asian ancestry mdash for the allele occurs almost exclusively in patients with Asian ancestry mdash to be screened for HLA-B1502 before starting treatment with CBZ in 2007 The National Health Insurance program has also started to
cover the expense of the genetic screening for HLA-B1502 in patients initiating CBZ since 2010 The team reported another strong genetic marker of HLA-B5801 for allopurinol-induced SCAR in 2005 The risk of developing the serious adverse reaction for people with the marker can be 500 times higher than those without the marker Chung said He added that NHI data show the drug causes about 20 deaths a year with the risk group consisting of those with kidney disease elders and people with the ldquothree highsrdquo mdash hypertension hy-perglycemia and hyperlipidemia Despite the genetic discovery the drug is still widely used in Taiwan Chung said Those with the genetic marker may suffer from adverse reac-tions such as acute kidney failure epidermal necrolysis body rashes and swelling and liver and kidney malfunctions after tak-ing allopurinol for two to three weeks Price is the main reason the drug is still widely used while a genetic screening might cost thousands of dollars Chung said calling on the government to lift the National Health Insurance payment limit for the risk grouprsquos drug replacement as new drugs for lowering uric acid are now available The research team has also found a genetic marker in people who are susceptible to SCAR induced by phenytoin another anti-epileptic drug and has scheduled to make the results public next year
Taipei Times Tue Nov 26 2013
httpwwwtaipeitimescomNewstaiwanarchives201311262003577713
Epilepsy Drug Can Induce Skin Disorders in Asians
MONTREAL December 9 2013 ndash Genome Canada and Geacute-nome Queacutebec are pleased to announce UCB Canada Incrsquos con-tribution to a four-year study aimed at developing a personalized medicine approach to the early diagnosis of various types of epi-lepsy The $108 million project ldquoPersonalized medicine in the treatment of epilepsyrdquo forms the Canadian Epilepsy Network (CENet) and is led by Dr Patrick Cossette at the University of Montreal Hospital Research Centre (CRCHUM) as well as co-leaders Dr Jacques Michaud Sainte-Justine University Hospital Research Center in Montreal and Dr Berge Minassian The Hospital for Sick Children in Toronto Funded primarily by Genome Canada and Geacutenome Queacutebec the research seeks to identify genetic changes that not only predis-pose people to epilepsy but also and more specifically the changes that predict the response to various anti-epileptic drugs Through a $200000 grant UCBrsquos partnership will help research-ers determine the genetic sequence of all genes in individuals
living with epilepsy who have different ranges of response to anti-epileptic drugs ldquoOn behalf of CENet I would like to thank UCB Canada for their generous contribution to this important projectrdquo said Dr Cossette ldquoUCBrsquos funding will help CENet reach our ultimate goal to foster the development of rational and tailored guide-lines for personalized treatment of drug-resistant epilepsyrdquo Although there are over 20 different anti-epileptic drugs avail-able today these drugs are ineffective in about one third of pa-tients Epilepsy is particularly problematic in children since un-controlled seizures in the developing brain largely contribute to cognitive decline Managing epilepsyassociated with intellectual disability is especially challenging since these symptoms are asso-ciated with a high rate of resistance to anti-epileptic drugs helliphellip (continued page 11)
UCB Canada Supports Efforts to Identify Personalized Treatment Approach for Drug-Resistant Epilepsy
Company partners with Genome Canada Geacutenome Queacutebec and multiple hospital research centres across the country
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Page 11
January - February 2014
Epilepsy News From Around the World
UCB Canada continuedhellip
ldquoUCB recognizes the important research that Dr Cossettersquos team is undertaking to help diagnose and treat drug-resistant epilepsyrdquo said Herveacute Lilliu General Manager UCB Canada Inc ldquoWe are hopeful that our contribution to this project will help the team reach their goal The development of personalized di-agnostics and treatment will constitute a major advance in pre-venting brain damage and cognitive impairment in individuals living with epilepsyrdquo
ldquoThe discoveries made over the course of this project will help develop new diagnostic assays and clinical guidelines to help neu-rologists and general practitioners determine which of their pa-tients would benefit most from alternative therapies such as surgery or a ketogenic dietrdquo said Marc LePage President and CEO of Geacutenome Queacutebec ldquoGenome Canada thanks UCB Canada Inc for their important contribution to this Canadian multi-centre project In addition to easing the considerable human cost of drug-resistant epilepsy the development of these diagnostic and treatment guidelines could represent a healthcare savings of nearly $12 million annu-ally in Canadardquo said Pierre Meulien President and CEO of Ge-nome Canada About Epilepsy A disorder of the central nervous system specifically the brain epilepsy is the tendency to have recurrent seizures One in every 100 Canadians has active epilepsy and the chance of ac-quiring it at some time during life is between two and four per cent While most often beginning either in childhood or late in life anyone can develop epilepsy at any time[ii] Each seizure in-creases the risk of brain damage especially in childhoodi About Genome Canada Genome Canada is a not-for-profit organization that invests in genomics research to generate economic and social benefits for Canadians Genome Canada builds bridges between government academia and industry to forge a genomics-based innovation-driven enterprise focused on key life science sectors We de-
velop these partnerships to invest in and manage large-scale re-search and translate discoveries into commercial opportunities new technologies applications and solutions For more informa-tion visit wwwgenomecanadaca About Geacutenome Queacutebec Since May 2000 Geacutenome Queacutebec has been the driving force behind the development of genomics in Queacutebec By supporting nearly 80 projects and 800 researchers and managing the opera-tions of the McGill University and Geacutenome Queacutebec Innovation Centre Geacutenome Queacutebec is helping to accelerate the discovery of new applications for genomics in strategic areas such as hu-man health forestry and the environment The funds invested by Geacutenome Queacutebec are provided by the Ministry of Higher Educa-tion Research Science and Technology the Government of Canada through Genome Canada and private partners For more information visit wwwgenomequebeccom About CRCHUM The CRCHUM improves the health of adults through a high-quality academic research continuum which by improving our understanding of etiological and pathogenic mechanisms fosters the development implementation and assessment of new pre-ventive diagnostic and therapeutic strategies The CRCHUM provides a training environment to ensure the development of new generations of researchers committed to research excel-lence About UCB Canada Inc Inspired by patients and driven by science UCB Canada Inc is a patient-centric biopharmaceutical leader focused on the discov-ery and development of innovative medicines and solutions to transform the lives of people living with severe auto-immune and central nervous system diseases For more information please consult wwwucbcomworldwidecanada The University of Montreal Hospital and the University of Montreal are known officially as Centre hospitalier de lrsquoUniversiteacute de Montreacuteal and Universiteacute de Montreacuteal respectively
Adding vitamin C to certain drugs can help them penetrate the brain and may improve treatment of neurological disease Many medicines that could potentially help in diseases such as Alzheimerrsquos disease Parkinsonrsquos disease and epilepsy are limited by their inability to reach the brain Thatrsquos because the brain is protected from lsquoforeignrsquo substances by a natural barrier ndash the blood-brain barrier But researchers at the University of Ferrara Italy may have found a way through using vitamin C They attached vitamin C to a drug that could be used to treat epilepsy but cannot alone reach the brain Mice with epilepsy showed no improvement when treated with the drug but when
vitamin C was attached there was a significant reduction in sei-zures The researchers think this works because vitamin C does penetrate the brain through vitamin C lsquotransportersrsquo found in brain tissue When a drug is linked to vitamin C they can use the transport-ers as a hook to pull them through the blood-brain barrier More research is needed before this approach can be tried in humans But it has huge potential for making effective drugs for diseases like Alzheimerrsquos Parkinsonrsquos and epilepsy
News FIX November 25 2013
Vitamin C Could Improve Brain Drugs
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services
Free ldquoKids on the Blockrdquo puppet presentations that educate children (and their teachers administrators caregivers and group leaders) about kids with Epilepsy in an entertaining manner
Free specially-tailored In-services about Epilepsy to schools businesses group homes Public Service bodies Colleges etc (includes annual training for NAIT EMT students and ETS Supervisors and Security Personnel and on-line information about Epilepsy on the EPS Training System)
Twice-yearly no-cost Epilepsy Educational Forums and a bi-annual weekend specialized Educational Conference all of interest to Health Care Professionals as well as the General Public
Free provision of our series of 12 Epilepsy Education Information booklets to Members Hospitals Clinics Neurologistsrsquo Offices and Pharmacies
Website print and video information about Epilepsy and a free lending library
A bi-monthly newsletter for Members that includes the latest current medical information available about Epilepsy as well as current news about the Association and our services and events
A Scholarship Program for Post-secondary Students with Epilepsy (minimum two scholarships a year)
Garry Hannigan Memorial Life Enhancement Scholarships for Youth to assist young people (up to the age of 18) to participate in sports arts cultural or recreational activities that will enhance their development as individuals
No-cost Counselling on Epilepsy-related problems for people with Epilepsy and Families of people with Epilepsy with referrals to other supporting Agencies as needed
Two group sessions a month one geared toward Adults with Epilepsy and concerned family members and one for ParentsCaregivers of Children with Epilepsy plus an Epilepsy Experiences Group
No-cost provision of assistanceadvice on diverse matters including but not limited to finding employment driving and Epilepsy potential side-effects of medication and dealing with the complexities of Government forms and applications (AISH Disability housing subsidy etc)
No-cost advocacy on behalf of people with Epilepsy experiencing discrimination or other problems
No-cost social and recreational activities for Members that help reduce social isolation and free ldquoDonate-a-Riderdquo Program bus tickets for Members in need
An annual no-cost in-house Collective Kitchen Cooking Training Program and annual in-house Computer Training Programs for Members
Ongoing recruitment and screening of quality Volunteers annual recognition of all Volunteers and annual award of Member-nominated Volunteer- Achiever- and Employer-of-the-Year Awards
Business Name
Place address label here
If you are planning to move in the near future please inform our office so that we can continue to ensure that you get your newsletter
Edmonton Epilepsy Association 11007-124th Street NW
Edmonton AB T5M 0J5
Our Programs and Services